Swallowing difficulty, dysphagia

[Suzan]

An "intolerance" to gluten will not show up on the blood work. Blood work and biopsies are only positive when there has already been damage to the villa. Enterolab does a stool test which tests for non celiac gluten intolerance. I had negative blood work, positive stool results and extremely positive results after removing gluten from my diet.

 

Us too, negative or inconclusive celiac panel, positive gluten intolerance and seriously positive response to gluten free diet. Although we don't have EE at our house. We had other gluten issues.....

 

Susan

Edited April 21, 2010 by Suzan

[AmySLP]

I do not know the details of your post from a few weeks ago. I do not know anything about EE, but I specialize in swallowing disorders/dysphagia as a speech-language patholgist in a medical setting. We do not deal with esophageal dysphagia in our scope of practice other than referring to a GI doc when we suspect it. But what I wanted to add is that if your daughter is having difficulty initiating a swallow, coughing, choking and/or complaining of food sticking in her throat, it may be important to know if the esophageal dysphagia is impacting her pharyngeal swallow (at the level of the throat). Should she have these symptoms and they persist, a modified barium swallow study/videofluoroscopy done with speech therapy and radiology present can give more insight and possibly treatment ideas relevent to this type of dysphagia.

 

I am very interested in the symptom of dysphagia in PANDAS children. My daughter did not have this but did have a mild vocal tic, which as a speech pathologist I always described as an involuntary glottal sound, almost like a throat clear but not as effortful. Our vocal cords, along with our laryngeal area constrict when we swallow to provide airway protection. If a child has involuntary vocal tics and cannot control this, then it can be assumed that the same lack of volitional control needed when swallowing to protect the airway can be interrupted by an involuntary tic.

 

If I can be of any assistance in this area, please ask away. I have always been so grateful for the help I have received on this forum and would love the opportunity to share info that I may have.

 

Amy

[worriedmommy]

I do not know the details of your post from a few weeks ago. I do not know anything about EE, but I specialize in swallowing disorders/dysphagia as a speech-language patholgist in a medical setting. We do not deal with esophageal dysphagia in our scope of practice other than referring to a GI doc when we suspect it. But what I wanted to add is that if your daughter is having difficulty initiating a swallow, coughing, choking and/or complaining of food sticking in her throat, it may be important to know if the esophageal dysphagia is impacting her pharyngeal swallow (at the level of the throat). Should she have these symptoms and they persist, a modified barium swallow study/videofluoroscopy done with speech therapy and radiology present can give more insight and possibly treatment ideas relevent to this type of dysphagia.

 

I am very interested in the symptom of dysphagia in PANDAS children. My daughter did not have this but did have a mild vocal tic, which as a speech pathologist I always described as an involuntary glottal sound, almost like a throat clear but not as effortful. Our vocal cords, along with our laryngeal area constrict when we swallow to provide airway protection. If a child has involuntary vocal tics and cannot control this, then it can be assumed that the same lack of volitional control needed when swallowing to protect the airway can be interrupted by an involuntary tic.

 

If I can be of any assistance in this area, please ask away. I have always been so grateful for the help I have received on this forum and would love the opportunity to share info that I may have.

 

Amy

 

Interesting that you mention a throat clearing tic. This is dd's main tic...during an exacerbation, she was doing it literally 10000 times a day. It really isn't a true throat clear. It has ranged from an airy cough noise to a loud breath noise (like Darth Vader from Star Wars), to an almost grunt like sound. It was this throat issue that first got us on the PANDAS track and also prompted the referral to the GI. I should also note that her throat issue seems to always get worse when eating.

[worriedmommy]

I posted this same question on Dr. T's PANDAS forum, and this was his response:

 

"Mast cell activation is critical in eosinophilic esophagitis

 

 

http://www.ncbi.nlm.nih.gov/pmc/articles/P.../nihms95164.pdf

 

 

And can you guess what can activate mast cells? (note this is not S.Pyogenes, the PANDAS streptococcus, but not that different)

 

 

http://www.ncbi.nlm.nih.gov/pubmed/19933827

 

 

So one possible mechanism is strep infection > mast cell activation > EoE. Food allergies worsen things, but may not be the entire cause

 

 

There is no doubt in my mind that the two conditions are somehow related."

 

 

Interesting....

[concerned lady]

Great replies here already, for "Worriedmommy"!

 

Regarding gluten sensitivity stool sample testing by Dr. Kenneth Fine's "EnteroLab" (located in Dallas, TX), here's a link to his excellent "EnteroLab" website:

www.finerhealth.com

 

Dr. Fine's "EnteroLab" stool sample testing results (for gluten sensitivity) are much more reliable than blood test results are. Why? Because the antibodies to gluten, are made by and in the large intestine, where stool is also made. And, the antibodies to gluten may not escape from the large intestine (colon/gut) into the bloodstream for many years, thereby giving false negative blood test results.

 

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I have some info about Eosinophilic digestive disorders (a type of allergic reaction) in my VCD (Vocal Cord Dysfunction/laryngospasm) website, on webpage 5, in the gastric reflux sections, at this link:

http://cantbreathesuspectvcd.com/page5.html

 

Here's what I have, so far, about "EGID":

 

"GERD/LPR (continued): (NEW INFO! MARCH & APRIL, 2008)

EGID/Eosinophilic-associated Gastro Intestinal Disorders, is a group of "allergic" type problems, (not a "regular" allergic problem), --one type of EGID is called EE (Eosinophilic Esophagitis), and another type of EGID is called EGE/EOSINOPHILIC GASTRO-ENTERITIS--, and I believe that EGE can cause gastric reflux, sometimes leading to VCD attacks. SEE A GASTROENTEROLOGIST, who can diagnose any type of EGID, such as EGE, by taking biopsies during an "endoscopy" of the digestive tract, looking for elevated (abnormally high) numbers of certain white blood cells called eosinophils. This "upper endoscopy" exam is also called EGD (Esophago Gastro Duodenoscopy), looking at and taking biopsy samples from esophagus, stomach, and duodenum/first part of small intestine. Also helpful, are ALLERGISTS/IMMUNOLOGISTS.

 

To learn more about EGID (diagnosis and treatments, including diet changes), including EGE (Eosinophilic GastroEnteritis), a severe and painful inflammation of stomach &/or intestines, and EE (Eosinophilic Esophagitis), etc., see these links, from a good website, about EGID.

 

http://www.apfed.org/

 

http://www.apfed.org/downloads/EGID_Diagnosis.pdf

 

I know of a VCD patient--a teenager who has the EGE type of EGID, and her reflux and VCD and pain are all improving, because she is avoiding gluten and other food proteins that cause her immune system to over-react. (8 most common allergens, from this link http://www.mayoclinic.com/health/food-allergies/AA00057) :

 

"Milk

Eggs

Peanuts

Tree nuts (such as almonds, cashews, walnuts)

Fish (such as bass, cod, flounder)

Shellfish (such as crab, lobster, shrimp)

Soy

Wheat"

 

The over-reaction includes producing too many eosinophil type white blood cells in the digestive tract, and one effect is stomach pain, irritation & inflammation (gastritis), resulting in reflux, leading to VCD attacks. Difficulty breathing (VCD) from the EGE's reflux, can sometimes last all day (can be constant). I don't know the original cause(s) of the EGE (maybe: reflux? infections? medications? vaccinations? environmental toxins? various MOLDS? food protein "sensitivities"? &/or ?).

EGID patients often need to TEMPORARILY go on what is called an ELEMENTAL DIET (no proteins, just doctor prescribed amino acids), in order to "calm down" the eosinophic inflammation reactions to certain incoming food proteins, that can cause pain & misery from inflammation in the digestive tract, where the inflammation is related to the vast increase of numbers of the eosinophil type blood cells, that "infiltrate" the lining of the digestive tract. Then, after the eosinophilic inflammation calms down, parents will do food trials, with doctor testing, to get the eosinophilic inflammation under complete control (completely calmed down). Then, parents can work on figuring out all the non-EGID causes of the possible VCD (with help of MD's & SLP's).

 

The VCD/EGID teenager patient's mother (nurse) said that EGID specialty clinics in the U.S. include: Childrens Hopsital of Cincinatti (Ohio), Children's Hospital of Philadelphia (Pennsylvania), Dr. Glenn Furuta, MD, at Children's Hospital of Denver (Colorado), UC (University of California) San Diego Rady Children's Hospital, and researcher (PhD) Steven J. Ackerman, at University of Illinois, at Chicago, IL.

The mother (nurse) said that "For adult patients, the expert is Dr. Nirmala Gonsalves", M.D., Department of Gastroenterology, Northwestern University, Feinberg School of Medicine," at Northwestern in Chicago" (Illinois).

 

See http://www.apfed.org/ and click on "about apfed" to get names of specific doctors who are on their medical board, and who know a lot about EGID.

 

The mother (nurse) also said that "Childrens Hospital of Phladelphia adds beef and corn as frequent EE [Eosinophilic Esophagitis] triggers ahead of nuts and fish."

Here's a somewhat technical but helpful article about EE (Eosinophilic Esophagitis), that says that reflux can sometimes cause EE, or, EE can sometimes cause reflux, or that a person can have both EE & reflux, where the EE & reflux are unrelated to eachother. This article contains additional useful links! http://www.thedoctorsdoctor.com/Diseases/e...osinophilic.htm

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I also have a little info in my VCD website about PANDAS, because "tics" can "mimic" VCD/"Vocal Cord Dysfunction". The PANDAS info is on webpage 3 of my website. I have added Lauren's mom's (Lynn) new website link ( http://www.pandasresourcenetwork.com ) to this info.

 

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Worriedmommy: One thing I thought of, that may link PANDAS to EE (Eosinophilic Esophagitis), etc., is this:

 

Some patients with tic disorders of any kind, who happen to be GLUTEN SENSITIVE, have found that accidentally eating gluten, made their tic disorder worse! And, when they strictly avoided gluten, their tics DECREASED. (Gluten is in wheat, rye, barley, etc., and rice is gluten-free).

 

Good luck to you and to all!

 

Carol Sidofsky

http://cantbreathesuspectvcd.com

Edited April 25, 2010 by concerned lady